Dr. David Amies: The disconnect between dying patients' wishes and the care they receive

In his latest blog post, Dr. David Amies discusses recent news reports that detail how doctors' attitudes toward death and dying could ultimately affect the quality of end-of-life care they give to their patients.

I have found three recent reports in the overseas press that are pertinent to the problems surrounding end-of-life care and medical aid in dying. The first deals with physicians’ keenness to institute treatment under a variety of circumstances. The second reveals that most doctors often give patients an inaccurate forecast of how long they are likely to live. And the third is an account of one doctor deliberately and knowingly interfering with a patient’s management at the patient's request in order to hasten her death.

In her annual report, Dr. Catherine Calderwood, Scotland's chief medical officer, suggested that doctors should pause and think before jumping in with both feet and inflicting treatment upon terminally ill patients. She believes that many in the profession reflexively hit the "treat button" before considering what patients really want. Her views are supported by several senior medical experts.

Today's patients have the ability to express what they want from their doctors and, just as importantly, what they don't want, should they become incapacitated. Several have living wills that outline their desires. Many have appointed substitute decision-makers to act for them if they cannot do so for themselves. It seems, however, that most members of the profession adopt the view that keeping the patient alive trumps all other options. By doing so, they may well expose the sufferer to weeks or months of fruitless suffering, anxiety and pain.

Dr. Calderwood spoke to several colleagues online to discover that the majority would refuse active treatment if they were in the same predicament. She found that 88 per cent of physicians would refuse dialysis, 67 per cent would refuse admission to intensive care and 95 per cent would not submit to CPR at the end of their own lives. And yet, these same men and women have no hesitation in recommending these very procedures for their patients. She said the research also showed that doctors assume the dying want to live longer when in actuality they want to be symptom-free and able to spend quality time with their families.

Doctors and nurses 'terrified'

In other news, an analysis of 42 studies involving 12,000 patients showed both doctors and nurses overestimated the time left to a given individual by a factor of two. Doctors and nurses are made very uneasy by the question, “How long have I got left?” They tend, therefore, to take an optimistic view and wildly overestimate.

Such inaccuracies are unfortunate because they might encourage someone to mistakenly accept, for example, yet another round of chemotherapy only to discover that the last few weeks or months will be plagued by many miserable side effects. A better course for these individuals would be to accept the inevitable and begin comfort care. By so doing, the short time they have left could be pain-, nausea- and anxiety-free, giving the dying person time to say goodbye and tie up all those inevitable loose ends.

Professor Paddy Stone of University College Hospital, London, who led the analysis, said that doctors and nurses were terrified of broaching the subject of death. He recommended that they should formally consult a colleague before issuing a prognosis. He urged medical schools to teach students more intensively the art of prognosis.

A U.K. first

On the other side of the coin, there are doctors who are listening to their patient's wishes and providing patient-centred end-of-life care.

In the United Kingdom, a woman who had been wearing a cardiac pacemaker for many years to treat a congenital heart condition asked her doctor to switch it off and allow her to die. She was experiencing increasingly severe symptoms which could no longer be properly controlled. Consequently, she had lost the desire to live.

Physician-assisted dying remains illegal in the United Kingdom, even after a campaign to have the law changed that began in 1931! However, her doctors agreed and turned off the gadget by means of a 20-minute invasive procedure. Patients have the right to refuse treatment: not to take the antibiotic in the face of an overwhelming infection; not to take any more insulin for diabetes; to refuse an essential blood transfusion and so on. Does having a doctor to operate in such a way to ensure death cross some legal line? It is hardly surprising to learn that this case has sparked much discussion among those in favour of medically assisted dying and those against.

Dr. David Amies is a retired doctor in Lethbridge, Alta., and a member of DWD Canada's Physicians Advisory Council.

(Header credit: Jacob Windham/Wikimedia)

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